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When families ask for RESPECT, what do they mean?

Parent carers often emphasise what they'd like to have more 'respect' from practitioners and service providers. But what does that actually mean?

For some, that may mean referring to us in a more formal way, for example calling me Mrs Aspland rather than Debs or Mum. But for me, respect goes much deeper than just the pleasantries.

Today, we are going to break it down and give some top tips on how families and practitioners can improve working relationships with RESPECT as a core element. When respect is present in a relationship, everyone will be happier, the meetings will be more productive and most importantly, our children benefit from the result.

R is for Recognition

When we talk about recognition, we don’t mean the, “Oh you’re wonderful, I don’t know how you do it,” type recognition. What we mean is recognise that:

Recognise that we're constantly battling with Education, Health and/or Social Care to get the same opportunities for our children as others do, so if we seem to be in "battle-mode" it's because past experience has taught us we won't get what our child needs without a fight.

Recognise that just because our child may have a learning disability, it doesn't mean we do. Plain English is always good, but speaking to us like we're hard of understanding never is.

Recognise that we need to do what works for our family, not what works best for you. We're talking about our child, not your budget.

Most importantly, recognise that we are experts in our children. We may need help with aspects of their diagnosis or needs but we know our children best, so use that expertise.

E is for Empathy

Please don’t presume that just because you work in this field and hear similar stories from a multitude of families, that you understand from an emotional perspective, what it's like to live in this special needs jungle. There is a big difference between recognising our situation and having and understanding what our lives are really like. A little empathy goes a long way.

Do remember you chose your career, we didn’t choose our carer role.

Do appreciate that we are juggling caring for our disabled child, ensuring they have their physical and emotional needs met, with running a household, often with other children in it and perhaps a paid (or unpaid) job as well.

Do appreciate that it is the system we are fighting and unhappy with, not you personally.

S is for Sincerity

Co-production requires relationships to be built on trusting the other party to be sincere and honest.

Don’t tell us what you think we want to hear.

Don’t be worried about admitting you are not sure what the answer is.

Don’t tell us you will find something out for us and then forget.

If you give us bad advice (because you misinformed us), we may not trust you enough to ask again and next time, you may have the answer.

Don’t become “unavailable” when you have to tell us our child cannot have something which you said we could!

Don’t ever, ever patronise us.

P is for Patience

When you are feeling impatient, stop and try to put yourself in our shoes. Have you given us all the information we need? Is there a chance one of us has misinterpreted some information or a situation? Take the time to check that we all know where we’re at. Sometimes it can be difficult to be patient - everyone has off days - especially if they appear angry or unengaged. So what can you do?

Remember:

We’re not angry with you personally, we are angry with the system that you just happen to represent.

We are often emotionally drained.

We are often physically exhausted.

We often don’t get a full night’s sleep .

We may be going through marital difficulties or be a single parent - many relationships can't take the strain.

We are more likely to have financial difficulties.

We are more likely to be stressed or depressed.

Sometimes you are the only adult we see during our day.

Sometimes we need you to tell us what we don’t know.

We don’t always know what we don’t know.

We don’t always know what the acronyms you use mean –e.g. TAC, OT, etc

Sometimes, it takes us a long time to ask for help.

Sometimes, we just need to have a moan!

E is for Encouragement

We all need encouragement and parent carers are no different. Being exhausted, living in battle mode and having stress levels that no medication can help can be soul-destroying. Believe me, many of us have sat and thought, “I can’t do this anymore” or “I don’t think I can take much more of this.” So how can you encourage us?

Find something positive to say about our child rather than just reporting the negative news. We need to hear the problems, but don’t start the sentence with something like, “Well, it’s not been his worst day,” because believe me, that isn’t a positive thing to hear.

We like to feel that we can occasionally offer you information that will benefit you and others. We become experts in our child and their diagnosis, so why not ask our opinion, demonstrating that you value our viewpoint.

If we share some tips and you pass them to another family and have success, let us know.

Encourage us to try something new or to make time for ourselves. Maybe research some carers' resources.

Encourage us to stick with it, when we don’t see results immediately.

Do remember that we actually are human too and often, amazingly, have a sense of humour.

Don’t tell us about other people who have it harder – we know this, but it doesn’t encourage us, it makes us feel guilty or even fear that this is where we will end up.

C is for Co-production

What is co-production? Why bother with co-production? What are the benefits? Why is it so important to families?

What is it?

Involving parents at the beginning of the process

Valuing the input and views of the parents as much as the practitioners in the room

Agreeing the final outcomes together

Agreeing an action plan together

Being honest and transparent

What it isn’t:

Producing something and then asking us what we think of it?

Asking parents for views and then ignoring them

Presuming you know what families want

Telling parents what you think they want to hear

What are the benefits?
With true co-production comes trust. Families trust that you are working with them and you care more about the collective goals rather than something else.

T is for trust

The biggest aspect of any successful relationship is trust. What happens when there is no trust?

If families don’t trust your intention, they feel the need to protect themselves and are cautious around you. They don’t get involved.

If families are unwilling to get involved, they don’t feel as if the plans were created for their benefit, there is no “buy in” for them to participate

If families don’t have a “buy in”, or feel involved, they don’t commit to the final decisions or plans and uncertainties remain.

If families don’t buy in to the decisions or plans made about their child, they (and others) feel they have no accountability and resentment festers.

The final result?

Goals are not met, results are not achieved and the team around the child breaks down.

Who benefits?

No one. It's like starting from scratch every time. So it's more work for you, more stress for the family and more set backs for the child.

So without trust, there is chaos. Trust isn’t something your position or title will bring, it will come from your actions and your behaviour. Sometimes it will feel like an uphill struggle, but the view at the top of the hill is so worth the climb.

SNJ thoughts…..

Respect is a two-way thing. You can’t have it if you don’t give it. We all want it, so let’s work on it - together. Let’s start Recognising the roles and knowledge that people bring, Empathising with the issues that people have with their roles, let’s be Sincere with each other, have Patience with one another, let’s start Encouraging each other, Co-producing as a team and most importantly, let’s work on that Trust.